Dizziness and unstable feeling for 2 years

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I am 35 year old male in fairly healthy condition. No major problems in my life other than moderate Asthma and chronic sinusitis. Over 2.5yrs ago I started to feel a little “off” as far as foggy brain and sometimes feeling like I could pass out at any moment, It felt like my brain wanted to shut down. Other very mild symptoms were some middle dizziness, hard time focusing, vision at times felt a little blurry. This seemed to start after the summer of 2016 where I had 2 separate incidents (May and October) at a music festival where I passed out while on cocaine and ecstasy. I’m not a hard core drug user but I do enjoy from time to time. Please don’t judge all this on this one little detail. I do not have a drug problem and I know that. My friends and fiance can attest to that. But I do wonder if this problem I’m experiencing spawns from that. The medical staff that I woke up to didn’t seem too concerned but some of my friends/witnesses think I had a seizure (some shaking and eyes rolled back). They checked my blood sugar level and I got up and walked out on my own after about a ½ hour without being checked on. I learned later from research that a cocaine induced seizure is possible. What actually happened to me? I’ll never know for sure.

I felt fine into the fall of 2016 then I started feeling off most of the time. This “feeling a bit off” continued sporadically for about a year until it started becoming a little more regular and sometimes intense in the winter of 2017. Symptoms included mild brain fogginess, tired all the time and wanting to sleep most of the time. It mostly seemed like a constant fatigue with some light headedness. During this time my exercise level was fairly low, snowboarding from time to time and the occasional hike. I lived in the mountains at the time and my living situation was stressful and un-enjoyable.

I spent most of 2018 spring and summer feeling this way but always assumed I just wasn’t getting very much exercise and battling fatigue. All this time I also had no smell, battled allergies daily and stuffed up most of the time. I’ve also most of my life had a hard time getting regular sleep. 4ish hours a night was a regular thing.

Late summer 2018 is when I started to really feel the symptoms getting worse and a lot heavier. After traveling to Spain in September for 2 weeks, I got home and went to the doctor with complaints of:



trouble focusing

sensitivity to light and sound

the sensation of weightlessness and moving to fast when sitting still

headaches and neck aches every day

feeling of losing consciousness

ringing in ears

pressure in my head/temples and sinuses

Daily headaches

At the time I was seeing a medi-cal doctor and his first thought it was my sinuses so we tried lots of steroids, 3 different antibiotics, 2 blood tests (both came back with no problems), diet change, sleep pattern change and a CT scan that showed my sinuses were completely backed up. In November of 2018 I switched to Kaiser network and started seeing an ENT that confirmed I had major nasal polyps that we had removed with endoscopic surgery on 1/2/19. I also had allergy tests done which all came back very mild to all allergens. My fiance and I were in high hopes that this was the answer to the problem. After the surgery the ENT told me they didn’t think this was causing the dizziness and other symptoms and referred me to a Balance specialist. For 2 months now I’ve been working with them to do physical therapy to correct what they believe to be an imbalance with my vestibular system. So far no changes and my symptoms are getting worse and more intense everyday.

For the last few weeks I’ve actually been feeling the sensation of things being out of place. Like for instance, I’ll see my trash can out of the corner of my eye and get the feeling it’s my cat. When I look over, I see the trash can and know that is what it was the whole time. Blind spots and blanking out are regular feelings now. I’m also experiencing heavy sensitivity to light and sounds. Piercing/loud sounds are startalling. My ENT told me they are at the end of their knowledge on this topic but he did do some research and suggested I might have a form of silent migraines (migraines without pain but experience persistent migraine auras). He suggested to look into this and he updated my GP with this theory and situation. A quick research on the internet returned several reads about Persistent Migraine Aura (PMA) that explains most of the symptoms I have.

I’ve been asking the doctors over and over if it could be a neurological problem. This past week I went to my GP and went over the latest details including the migraine idea. My GP quickly dismissed this idea as he had never heard of such a thing. Very frustrated at this point I asked again if this could be neurological and explained the recent audio/visual sensations I’ve been seeing and he called the Neruo department and they ordered an MRI. They said they want to rule out any organic diseases and if that comes back clean then they want me to see a phyciatrist. They want me to see a phyciatrist because of the recent “hallucinations”. I really don’t think that this is a mental issue, as it is so physical in nature. Am I wrong? My doctor didn’t do a good job of explaining why they think this. So I’m suppose to go talk to someone about all this, but in the meantime my physical symptoms are getting worse. I can’t even get up and walk down the hallway to the bathroom without feeling dizzy and the sensation of going to fall over.

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9 Replies

  • Posted

    Do you ever have any pain right in front of one or both ears?

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  • Posted

    i have these symptoms and others around body and im doung tests on lyme - mould and metaks

    if you have metal in your mouth for exp you can exoerience many issues .

    if you dont have any gastro issues or joint pain then prob you can rule out many things

    the middle ear can have infection and crystaks can fall in wrong place

    there are home fixes for that on line

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  • Posted

    I could of wrote this, plus or minus just a couple of things. Welcome to my world! I was diagnosed with Vestibular migranes MAV, now POTS. been three years going into four.   I think its a virus that eventually takes over, I have no proof. No one really does.  It does get better. Did you get your Vitamin D or B12 checked? Mine were both critically low.  You can go down the pill route but I can gurantee you that if follow a natural supplement regime you will probably get out of the critical state quicker.  You are not alone.
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  • Posted

    I have a lot of the same symptoms as you do, was diagnosed with vestibular migraine by my neurologist 5 years ago. I have had this since 2011 and it is really distressing. I have had several tests, brain MRI, vestibular testing by ENT doctor, blood work, etc, all came out normal, which goes along with this diagnosis. ENT doctor also though this is what I had. I joined some Facebook (vestibular migraine) sites looking to see if anyone has answers. Also looked at YouTube videos. There are people in both places that have similar symptoms and a lot of different suggestions. VEDA has some good YouTube videos.

    I have tried just about everything. I do have headaches associated with this sometimes, but the more disturbing problem is the dizziness/loss of balance/visual problems/feeling of stuffiness in my head. I am to the point where it is hard to go out of the house and haven't driven for a year. I'm going to go back to the neurologist and see if he has any new suggestions. He prescribed Topamax which I couldn't tolerate, but some people say it helps with headaches, not so much the dizziness.

    There are so many different diagnoses for conditions like we have, but I would check out vestibular migraine and go back to a neurologist or ENT. It is a relatively new diagnosis and poorly understood in the medical community. I notice it flares up for me when I'm under a lot of stress, when I haven't had enough sleep, also changes in the weather cause symptoms. I have had it almost every day now for some time and know how frustrating and disabling it can be. It's interesting it flared up after a plane trip. I have read different places that can set things like this off, possibly because of barotrauma and disturbance to the vestibular system.

    I, too, have mild asthma and allergies. Allergies can go along with the migraines, I've read. I do take loratadine (for allergies) prescribed by my GP, alprazolam (for anxiety and sleep) and gabapentin, also prescribed by my neurologist, all of which help sometimes but not all the time. Activity makes me feel better when I can be active.

    Good luck to you. I hope we can find some help for this very disabling set of symptoms.

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    • Posted

      thank you for the response. just to be clear, the symptoms we're already bad before my plane rides, i don't think they had anything to do with it. Also i requested from my GP to try some migraine medicine and I'm going to start that tomorrow. I also have an MRI scheduled tomorrow and should have results by Friday. I will update as i go.

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  • Posted

    A lot of people cannot believe that tmj could be so bad to cause these symptoms but it can. Do research on it sometimes its as simple as sleeping with a mouthguard. I do and you can get one at a drug store.

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  • Posted

    Def worth a shot. Tmj can cause a lot of swelling in or near the middle ear. Good luck hope it helps.

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